‘Positive’ symptoms

These are unusual experiences. Many people have them from time to time and they need not be a problem. In schizophrenia, they tend to be much more intense, troublesome, pre-occupying and distressing.

Hallucinations

A hallucination happens when you hear, smell, feel or see something - but it isn't caused by anything (or anybody) around you. The commonest one is hearing voices.

What do voices sound like?

They sound utterly real. They usually seem to be coming from outside you, although other people can’t hear them. You may hear them coming from different places, or they may seem to come from a particular place or thing.

Voices can talk to you directly or talk to each other about you – it can be like over-hearing a conversation. They can be pleasant, but are often rude, critical, abusive or just plain irritating.

How do people react to them?

You may try to ignore them, talk back to them – or even shout back at them if they are particularly loud or irritating. You may feel that you have to do what they tell you, even if you know you shouldn't. You may wonder if they are they coming from hidden microphones, from loudspeakers, or the spirit world.

Where do they come from?

Voices are not imaginary – you really do hear them - but they are created by the mind. Scans have shown that the part of the brain that 'lights up' when you hear voices is the same area that is active when you talk, or form words in your mind.

The brain seems to mistake some of your thoughts, or ‘inner speech’, for voices coming from outside you.

Do other people hear voices?

You can also hear voices in severe depression. They tend to be simpler, repeating the same negative or critical word or phrase over and over again.

You can also hear voices which don't interfere with your life. They may be pleasant, or not very loud, or only happen from time to time. These voices do not usually call for any kind of treatment.

Other kinds of hallucination

You may see things that aren't there, or may smell or taste things that aren't there. Some people have uncomfortable or painful feelings in their body, or feelings of being touched or hit.

Delusions

A delusion happens when you believe something – and are completely sure of it – while other people think you have misunderstood what is happening.

It's as though you see things in a completely different way from everyone else.

You have no doubts, but other people see your belief as mistaken, unrealistic or strange. If you do try to talk about your ideas with someone, your reasons don’t make sense to them, or you can’t explain – you ‘just know’.

It's an idea, or set of ideas, that can't be explained as part of your culture, background or religion.

How does it start?

It may suddenly dawn on you that at last you really understand what is going on. This may follow weeks or months when you have felt that there has been something wrong, but that you couldn’t work out what it was.

A delusional idea can be a way of explaining hallucinations. If you hear voices that talk about you, you may explain it to yourself with the idea that a government agency is tracking you.

‘Paranoid’ delusions

These are ideas that make you feel persecuted or harassed. They may be:

unusual – it feels as though MI5 or the government is spying on you. You may think that neighbours are influencing you with special powers or technology.

everyday - you start to believe your partner is unfaithful. You do so because of odd details that seem to have nothing to do with sex or not being faithful. Other people can see nothing to suggest that this is true.

upsetting – feeling persecuted is obviously upsetting for you. It can also be distressing for the people you see as your persecutors, especially if they are close to you, like your family.

Ideas of reference

You start to see special meanings in ordinary, day-to-day events.

It feels as though things are specially connected to you – that radio or TV programmes are about you, or that someone is telling you things in odd ways, for example, through the colours of cars passing in the street.

Coping with delusions

Delusions may, or may not, affect the way you behave.

It can be hard to talk to other people about them – you realise that they won't understand.

If you feel that other people are trying to harm or harass you, you will probably just keep to yourself. If you feel really threatened, you may want to hit back in some way.

You may try to escape your feelings of persecution by moving from place to place. After a few days or weeks in a new place though, the feelings just come back.

Muddled thinking (or ‘thought disorder’)

You find it harder to concentrate – it's more and more difficult to:

finish an article in the newspaper or watch a TV programme to the end

keep up with your studies at college

keep your mind on your job at work.

Your thoughts wander. You drift from idea to idea – but there's no clear connection between them.

After a minute or two you can’t remember what you were originally trying to think about. Some people describe their thoughts as being ‘misty’ or ‘hazy’ when this is happening.

When your thoughts are disconnected in this way, it can be hard for other people to understand you.

Feelings of being controlled

You can also feel that:

your thoughts have suddenly disappeared – as though someone has taken them out of your mind;

your thoughts feel as though they are not yours – it's as though someone else has put them into your mind;

your body is being taken over, or that you are being controlled like a puppet or a robot.

Some people explain these experiences by thinking it's the radio, television or laser beams, or that a device has been implanted in them. Other people blame witchcraft, angry spirits, God or the Devil.

‘Negative’ symptoms

You start to lose your normal thoughts, feelings and motivations.

You lose interest in life. Your energy, emotions and ‘get-up-and-go’ just drain away. It’s hard to feel excited or enthusiastic about anything.

You can’t concentrate.

You don't bother to get up or go out of the house.

You stop washing or tidying, or keeping your clothes clean.

You feel uncomfortable with people.

People can find it hard to understand that negative symptoms are really symptoms – not just laziness.

This can make it difficult for both you and your family. Your family feel that you just need to pull yourself together.

You can’t explain that … you just can’t. Negative symptoms are less dramatic than positive symptoms, but can be really hard to live with.

It affects around 1 in every 100 people over the course of their life.

It affects men and women equally and seems to be more common in city areas and in some ethnic minority groups. It is rare before the age of 15, but can start at any time after this, most often between the ages of 15 to 35.

We don’t yet know for sure. It is probably a combination of several different things, which will be different for different people.

Genes

Although only 1 in 100 people get schizophrenia, about 1 in 10 people with schizophrenia have a parent with the illness.

Twins

An identical twin has exactly the same genetic make-up as his or her brother or sister, down to the smallest piece of DNA. If one identical twin has schizophrenia, their twin has about a 50:50 chance of having it too.

Non-identical twins have a different genetic make-up to each other. If one of them has schizophrenia, the risk to the other twin is just slightly more than for any other brother or sister. These findings are much the same even if twins are adopted and brought up in different families.

Relatives with schizophrenia

Relatives with schizophrenia

Chance of developing schizophrenia

None

1 in 100

1 parent

1 in 10

1 identical twin (same genetic make up)

1 in 2

1 non-identical twin (different genetic make up)

1 in 8

Brain damage

Brain scans show that there are differences in the brains of some people with schizophrenia – but not in others. Where this is the case, it may be that parts of the brain have not grown normally because of:

a problem during birth that stops the baby’s brain from getting enough oxygen

a virus infection during the early months of pregnancy.

Drugs and alcohol

Sometimes, street drugs seem to bring on schizophrenia.

Amphetamines can give you psychotic symptoms, but they usually stop when you stop taking the amphetamines. We don’t yet know whether these drugs, on their own, can trigger off a long-term illness, but they may do if you are vulnerable.

Some people start using drugs or alcohol to cope with symptoms, but this can make things worse.

Cannabis

The heavy use of cannabis seems to double the risk of developing schizophrenia. New research has shown that the stronger forms of cannabis, such as skunk, may increase this risk.

It’s more likely if you start using cannabis in your early teens.

If you have smoked it frequently (more than 50 times) during your teens, the effect is even stronger – you are 6 times more likely to develop schizophrenia.

Stress

Difficulties often seem to happen shortly before symptoms get worse. This may be a sudden event like a car accident, bereavement or moving home. It can be an everyday problem, such as difficulty with work or studies. Long-term stress, such as family tensions, can also make it worse.

Family problems

At one time people thought that communication problems in the family could cause schizophrenia. This doesn’t seem to be the case. However, if you have schizophrenia, family tensions can certainly make it worse.

A difficult childhood

As with other mental disorders, schizophrenia is more likely if you were deprived or physically or sexually abused as a child.

A few people with schizophrenia do become violent – they usually hurt themselves but sometimes hurt other people. This can be caused by feelings of persecution or voices telling them to do it – often a combination of the two. It is much more likely if the person has used drugs or alcohol.

Many people with schizophrenia now never have to go into hospital and are able to settle down, work and have lasting relationships.

For every 5 people with schizophrenia:

1 will get better within five years of their first obvious symptoms

3 will get better, but will have times when they get worse again

1 will have troublesome symptoms for long periods of time.

What will happen as time goes on?

If you just hear voices, don't mind them and they don't interfere with your life, you probably may not need any special help. However, if the voices become too loud or unpleasant (or if other symptoms develop), then you should talk it over with a doctor.

Suicide is more common in schizophrenia – particularly if someone has symptoms, has become depressed, is not getting treatment or is getting less help than they used to.

The evidence is beginning to suggest that if schizophrenia is treated early:

you are less likely to have to come into hospital

you are less likely to need intensive support at home

if you do come into hospital, you will spend less time there

you are more likely to be able to work and live independently.

If you have the symptoms of schizophrenia for the first time, you should start medication as soon as possible.

You may not need to come into hospital, but you will need to see a psychiatrist and a community mental health team. They will usually be able to plan your treatment with you at home. Even if you do have to come into hospital, it will only be until you are well enough to manage at home.

Medication

This can help the most disturbing symptoms of the illness – but it is not the whole answer.

It is usually an important step which can make other kinds of help possible. Other important parts of recovery are support from families and friends, psychological treatments and services such as supported housing, day care and employment schemes.

Medication reduces the effects of the symptoms on your life. Medication should:

weaken delusions and hallucinations gradually, over a period of a few weeks;

help your thoughts to be clearer;

increase your motivation and ability to look after yourself – although too much medication (or the wrong medication for you) can have the opposite effect.

How is it taken?

As tablets, capsules, or syrup. It’s hard for anybody to remember to take tablets several times a day, so there are now some that you only need to take once a day.

If you find it hard to take tablets every day, you may find it easier to take antipsychotic medication as an injection every 2, 3 or 4 weeks. These are called depot injections and are given by a nurse.

How well does medication work?

About 4 in 5 people get help from them. They control the symptoms, but do not get rid of them. You have to go on taking the medication to stop the symptoms from coming back.

Even if the medication helps, the symptoms may come back. This is much less likely to happen if you carry on taking medication, even when you feel well.

How long will I have to take medication for?

Most psychiatrists will suggest that you take medication for a long time.

If you want to reduce or stop your medication, discuss this with your doctor.

Reduce your medication gradually. If you do this, you can notice any symptoms returning before you become really unwell again.

What happens when I stop taking medication?

The symptoms will usually come back – not immediately, but usually within 3 – 6 months. You can find more information about antipsychotic medication on our website.

Getting back to normal

Schizophrenia can make everyday life hard to deal with. This may or may not be due to the symptoms. Sometimes you may just get out of the habit of doing things for yourself. It can be difficult to get back to doing ordinary things like washing, answering the door, shopping, making a phone call or chatting with a friend.

Cognitive Behavioural Therapy (CBT)

This can be done by clinical psychologists, psychiatrists or nurse therapists. It helps you to:

concentrate on the problems that you find most difficult. These could be thoughts, hallucinations or feelings that you are being persecuted.

look at how you tend to think about them – your ‘thinking habits’.

look at how you react to them – your ‘behaving habits’.

look at how your thinking or behaving habits affect you.

work out if any of these thinking or behaving habits are unrealistic or unhelpful.

work out more helpful ways of thinking about these things or reacting to them.

try out new ways of thinking and behaving.

see if these work. If they do, to help you use them regularly. If they don’t, to find better ones that do work for you.

This kind of therapy can help you to feel better about yourself and to learn new ways of solving problems. We now know that CBT can also help you to control troublesome hallucinations or delusional ideas.

Most people have between 8 and 20 sessions, each lasting about 1 hour. To help the symptoms of schizophrenia, you may need to carry on with ‘booster’ courses from time to time.

Counselling and supportive psychotherapy

These can help you to:

get things off your chest

talk things over in more depth

get some help with the daily problems of life.

Family meetings

These try to help you and your family cope better with the situation.

They can be used to discuss information about schizophrenia, how best to support someone with schizophrenia and how to solve the practical problems that can crop up. Meetings are held over a period of about 6 months.

Support from the Community Mental Health Team (CMHT) or Early Intervention Team

A mental health worker from your local team (your care coordinator) should see you regularly. Community psychiatric nurses can give you time to talk and can help sort out problems with medication.

Occupational therapists can:

help you to be clear what your skills are and what you can do

show you how to improve things you aren’t doing so well

work out ways of helping you to do more for yourself

help you to improve your social skills (how to get on with other people).

There may be help for families, with regular meetings for a while. These can help the family to:

learn more about the illness and treatment

sort out some of the practical problems of day-to-day living.

The psychiatrist will usually organise your medication and take responsibility for your overall care.

The care coordinator is responsible for making sure that you get the care you need.

Vocational rehabilitation or recovery workers can help you to get back into work, education or some sort of activity that you find rewarding.

Managing your medication

Apart from clozapine, antipsychotic medications seem to work as well as each other. Which antipsychotics you start with will need to be discussed fully with your doctor, taking into account their possible side-effects.

It is also not possible to predict whether one antipsychotic will work better for you than another. You may need to try one antipsychotic and see how you get on with it. If it doesn't help you, or if the side-effects are a problem, your psychiatrist will help you to find one that suits you.

Clozapine does seem to work better than other antipsychotics for some people. However, its side-effects can be dangerous, so it can only be prescribed by a specialist after other treatments have failed. If you have had both a ‘typical’ antipsychotic and an ‘atypical’ antipsychotic for 8 weeks without real help from either, clozapine may be worth trying.

Your medication should be reviewed by your psychiatrist at least once a year.

CBT seems to be helpful in people who are taking medication. We don’t know how well it works if someone is not taking medication. It is recommended in very early schizophrenia, or if you are likely to develop a psychosis.

If you want further information about treatments, see the NICE guidelines (listed below).

If you are unhappy with your treatment, you can ask for a second opinion from another psychiatrist.

Recovery

You may not be working, or may be unable to go back to work. Even so, it’s good to get out and do something every day.

Many people go regularly to a day hospital, day centre, or community mental health centre. These have a number of things you can do – keep fit, creative pursuits like painting and pottery, education or getting back to work activities. You can get active again and spend some time with other people.

These facilities don't exist in some areas where there is, perhaps, more emphasis on helping people to be included in ‘mainstream’ activities for everybody, whether or not they have had psychological difficulties.

Some services can now provide support from people who themselves have had a psychotic illness.

Getting back to work

You may need to develop your skills for work. Vocational workers will often have contacts with local employers and can support you when you go back to work.

Art therapies

These use art activities to help people to:

find different ways of being with other people

express and understand feelings they may not have been able to put into words

to have the satisfaction of creating something.

These activities are usually done in groups.

Supported accommodation

This could be a bedsit or flat where there is someone around to help you with day-to-day problems.

CPA – Care Programme Approach (England & Wales only)

This is a way of making sure that people with schizophrenia get appropriate care and support. It involves:

a care coordinator who is responsible for organising all the different parts of your care and treatment.

regular meetings every 3 – 6 months. These involve you, your care coordinator, your psychiatrist and any other people who are giving you care or support. This can include your family or carers.

a care plan that is checked at the regular CPA meetings. It is re-written each time and you will have a copy to approve or change.

plans are made with you at these meetings about what to do if you find yourself becoming unwell again, or run into difficulties.

listen to a personal stereo (TV and radio also work but may annoy your family or neighbours).

remind yourself that your voices can’t harm you

remind yourself that your voices can't harm you

remind yourself that your voices don’t have any power over you and can’t force you to do anything you don’t want to.

Join a self-help group for people with similar experiences to yours (see below).

Agree with someone you trust that they can tell you if you are becoming unwell again.

Learn about schizophrenia and your medication:

talk it over with your nurse, mental health worker, psychiatrist - or someone else with schizophrenia

ask for written information about your diagnosis and treatment

if your medication is not working well, ask about other medications.

Your physical health

Look after your body. People with schizophrenia have poorer health than other people. It's not clear why. It may be something to do with eating badly, getting less exercise and smoking more than other people. It may be made worse by some of the medications that are prescribed for psychosis.

Whatever the causes, if you have schizophrenia, it makes sense to take care of your physical health. Both your GP and your psychiatrist need to help you do this. They should

Help you to eat better and keep active.

Regularly monitor your weight and how your heart is working.

Help you to cut down or stop smoking. This could be Nicotine replacement - gum, patches or inhalers. There are also some medications that can help.

Isn't schizophrenia a split personality?

No. Too many people have the idea that someone with schizophrenia can appear perfectly normal at one moment, and change into a different person the next. This is not true.

People can misuse the word ‘schizophrenia’ in two different ways to mean:

Having mixed or contradictory feelings about something. This is just part of human nature - a much better word is ‘ambivalent’.

That someone behaves in very different ways at different times. Again, this is just part of human nature.

Doesn't schizophrenia make people dangerous?

Usually not. Any violence is usually sparked off by street drugs or alcohol - not unlike people who don’t suffer from schizophrenia.

There is a higher risk of violent behaviour if you have schizophrenia, but it is very small compared to the effects of drugs and alcohol. People with schizophrenia are far more likely to be harmed by other people than other people are to be harmed by them.

Schizophrenia never gets better

1 in 4-5 people with schizophrenia recover completely. 3 out of 5 people with schizophrenia will be helped or get better with treatment.

If there is an inaccurate or abusive item about schizophrenia in the press, a radio talk show or on TV. don't get depressed, get active. Write a letter, email them, phone them and tell them where they are wrong. It does work.

Credits

This information is based on the NICE guidelines. It was produced by the Royal College of Psychiatrists' Public Engagement Editorial Board, and reflects the best available evidence available at the time of writing.

Series Editor: Dr Philip Timms

User & Carer input: Service User and carer representatives from the RCPsych Public Engagement Editorial Board.